Another Change of Plans!!

A lot came up yesterday and I was just about to lose it. I got an email from the director of occupational therapy at Shriner's in Houston asking us to come there for Peyton's care. She also mentioned that their doctors are not at all impressed with Shriner's in Greenville program for arthrogryposis. She said they could get Peyton in to the next arthrogryposis clinic which is Aug. 2. At first I thought this was going to be the 3 month program she spoke of at the convention where they do therapy there twice daily for the first 3 months - then taper down based on the child's needs. She went on to say how experienced they are there and how she felt Peyton has a lot of potential. I was so torn!! I was very impressed with their presentation at the convention and thought that would be a good option for us as well. My thoughts instantly were what to do about the other two kids. Morgan starts back to school in a couple of weeks and I just have to be here for that - especially since it's a new school this year! I just don't think I could be away for so long. So I emailed her back and told her my fears and also about our appointment with Dr. Van Bosse in New York. Her response was that it wouldn't be for 3 months - it would just be long enough for them to get splints made and get therapy going and let the doctors evaluate him. Then they would send us home with materials for our therapists here to follow. Well that made me feel better knowing it wouldn't be for so long. I told her I would have to talk to Chad about it and we'd make a decision together. So then we get a call from TEIS (early intervention) telling us that there could be a problem with them paying for Peyton's therapy if it is going to be so frequent now. They said going everyday would cost $1000 or better each week and they have never had such a request. So please pray for that one because we still don't know what the outcome will be for that. I did call our insurance company to see if there was anything they could do as far as giving him additional visits based on his medical diagnosis. I had to leave a message though. We have a yearly cap of 90 visits. He would max what's left of those out in 2 months! And he still doesn't have TennCare. We're hoping to get SSI approved and at least just have the insurance but we're still waiting for an answer. Well Shriner's called me today begging us to come on down there. She said she spoke to their doctors and they really want us to bring Peyton to Houston. She said they want him down there before the clinic - come Mon. and leave Fri. And their whole team can evaluate him. After a lot of thought and prayer, we decided the best path for us is to cancel Greenville (Shriner's), go to Houston, and then still go see Dr. Van Bosse in New York on the 14th. We feel that would be best for him right now considering we have already wasted 3 months of precious time (I blame ourselves for not shopping around for a doctor from the start and getting 2nd opinions). We need to keep a couple of doors open and if ever we feel that all his needs can be met in one place, we'll give up the other. So we leave for Houston on Aug. 29 and will return Aug. 4. Not too bad. Airfare is going to kill us - but we don't have to pay for a place to stay when we go to Shriner's - they have a place in the hospital for us. More than likely Chad will only be going part of the time and I will be on my own a lot. We just can't afford plane tickets for both of us since obviously we'll be traveling often for many years to come. We want Peyton to have the best of care no matter what it takes.
So please remember us - we're in for a long, emotional, stressful, and expensive journey. It will be quite rewarding in the long run for Peyton though.